ALS News Today Forums Forums COVID-19 and ALS ALS and Coronovirus

  • ALS and Coronovirus

    Posted by paula-patriarca on January 24, 2023 at 7:20 am

    My husband’s ALS symptoms started slightly after having Covid in November of 2020.  After getting the vaccine in March 2021 they escalated dramatically.  We will not be getting any of the vaccines.  For some reason, they seem to worsen his condition and we do not want to take that chance.

     

    powerpadman replied 3 weeks, 4 days ago 10 Members · 16 Replies
  • 16 Replies
  • Dagmar

    Member
    January 24, 2023 at 4:14 pm

    Paula, I caution you to connect having the vaccine and causing ALS symptoms. It most likely was a coincidence.

    I had severe side effects following my first two vaccines. They were both Moderna. Then for the third, I switched to Pfizer – – no side effects at all.

    I would recommend a few days of feeling the effects of either vaccine over having a full-blown case of covid. That is almost unbearable for anyone with ALS, during covid and the weeks and weeks following it.

  • James

    Member
    January 25, 2023 at 10:58 am

    Paula, I also have the so called coincidence of being diagnosed with ALS after the 2nd jab.  I was in good health, but then started downhill slide.

    Jim

  • greg-herrin

    Member
    January 25, 2023 at 12:44 pm

    I started experiencing ALS symptoms (left leg weakness & foot drop) the day after I received the COVID vaccine in May 2021.  My weakness progressively increased leading to my ALS diagnosis 10 months later.  My PCP advised that I take  no future vaccinations, therefore I only received only the initial COVID vaccination.  Zero symptoms prior to receiving the vaccine.  Highly unlikely that this was a coincidence, the vaccine triggered whatever causes ALS in my case.

  • Dagmar

    Member
    January 25, 2023 at 4:14 pm

    I tend to agree with John about ” the vaccine possibly accelerating the otherwise slow progression of ALS.”

    I have assumed my ALS actually began on a cellular level in my body, way before my symptoms became noticeable. Therefore the experience of having a covid vaccination might be just the catalyst needed to spur on progression and have symptoms become visible and noticeable.

    • john-hamilton

      Member
      January 26, 2023 at 3:07 pm

      Interesting, Dagmar! Unfortunately, if it was my message that you’re referring to, I must have accidentally zapped it when I tried to edit it later!

  • shawn-shevalier

    Member
    January 26, 2023 at 2:23 pm

    Paula,

    Were you Covid Vax skeptical beforehand?

  • beth-rookey

    Member
    January 26, 2023 at 2:36 pm

    I’ll throw my 2¢ in – I’ve had ALS 30 years & was positive for Covid in January ’21, asymptomatic for the most part. I watched my Dad battle it for 2 months, in the hospital where it was touch and go for a while. When they offered the vaccine, I took it – 2 doses & 2 boosters of Moderna and no side affects or progression of symptoms. I didn’t want to deal with Covid so I trust the science & my neuro!

  • henry-feinberg

    Member
    January 26, 2023 at 2:55 pm

    Thank you for sharing your story.

    I am almost 80 and was  diagnosed with ALS. In December 2022. Until June 2021 I was walking 4 miles a day.

    Then shortly after receiving my second Covid  shot, I developed a limp. I attributed this to arthritis but subsequent cortisone shots while eliminating my discomfort, the limp stayed on.

    Then in late November 2021 I received my first booster and shortly thereafter my balance started to decline. While I could still walk a mile, I could no longer stand still in one place without shuffling my feet. I also lost some fine motor skills in my right hand.

    So —I have what I have – is it Covid vaccine related?—-nobody can tell me it’s a coincidence; not even the docs at OSU and the Cleveland Clinic. The Covid vaccine is responsible for triggering these symptoms.

    Henry

    • shawn-shevalier

      Member
      January 26, 2023 at 3:49 pm

      As many of you are aware, Covid has become highly political.
      I suspect people like Paula and Henry are on the Dunning-Kruger side of those politics.

      Paula stated that “we” won’t be getting any further vaccines and Henry said that”nobody can tell me it’s a coincidence”. It sounds like these people have convinced themselves regardless of anything the science produces. That’s not to say that the science may not eventually validate their conclusions, but they likely won’t accept it if it doesn’t.

      Why does it matter? If Henry and Paula’s husband get Covid and die because their lungs are weakened by ALS, that’s on them.
      But if their unscientific certitude influences someone who otherwise would have gotten the shot at the advice of their Healthcare professional, that’s irresponsible.

      As someone who has had ALS a few years, I can tell you that your progression rates are not unprecedented. I got ALS before Covid, I’ve had all of the shots, and my progression matches the standard rate over time.

      For those of you following this thread for input on your decision making, I will leave you with this: rarely is anecdotal evidence better than actual evidence derived from the scientific method.

      Shevy

  • henry-feinberg

    Member
    April 11, 2023 at 3:32 pm

    Steve,

    Who do you think you are to criticize my views with such impunity? I stand by them 100% until it is proven that the Covid Vaccine is not responsible for causing MY ALS symptoms. To suspect that there is a political overtone to my message is absurd. My entire family (11) has had all their shots and boosters and no one has had an adverse reaction–but me. But all of our systems are different. I had to be raised on goats milk, otherwise I wouldn’t have survived my first year.

    I have recently turned 80, had a great life up until 18 months ago, so what will be –will be. I’m just trying to share my perspective and thoughts relative to my personal situation and the topic at hand.

    Henry

     

    • shawn-shevalier

      Member
      April 11, 2023 at 3:54 pm

      Hi Henry!

      Are you the same Henry who wrote this?…

      “So —I have what I have – is it Covid vaccine related?—-nobody can tell me it’s a coincidence; not even the docs at OSU and the Cleveland Clinic. The Covid vaccine is responsible for triggering these symptoms.

      Henry”

      If no one, including doctors, can’t tell you anything contrary from what you’ve decided from anecdotal evidence, you sir are a bad influence. Criticism sustained.
      My name is not Steve.

  • Dagmar

    Member
    April 11, 2023 at 5:03 pm

    Henry and Shawn – – as a forum co-moderator I am reminding you both (and all our forum members) that we expect and only allow polite discourse and discussions in our forum. Thank you. Dagmar

  • shawn-shevalier

    Member
    April 20, 2023 at 4:02 pm

    Paula,

    I make this response, not so much for you, but for someone looking for guidance and more than one opinion…

    I had ALS symptoms and a diagnosis well before receiving the Covid vaccines. I did not have any side effects and my ALS decline was normal for ALS. I have yet to contract Covid.
    The scientific method has to allow for the possibility that the vaccine adversely affected your pALS progression, but it must allow for it being coincidence.
    I, myself, will continue getting the vaccine because -at this point – I’m more afraid of pneumonia.

    Good luck, Shevy

  • DaveAndKimberly

    Member
    February 16, 2024 at 4:39 pm

    Hello,

    Very new to the site, but We (my wife of 34 years, and I) strongly believe that her ALS came from the Pfizer COVID vaccine. Her symptoms became noticeable 2 weeks after her second shot. Here’s how her symptoms presented:

    · End March of 2021

    o Started to feel tingling and numbness in left hand

    · July 2021. Went to see PCM at McChord Base about this issue, but was sent to ER

    o Because of high blood pressure.

    o And the tingling and numbness in left hand.

    · August 13, 2021, Husband hit left side of head with top of 4-Runner when closing.

    o Lips were shrinking and numb

    o Jaw could not close

    · January 2022 established new PCM because left finger weakness.

    o Difficulty holding clipper and clipping right fingernails

    o Numbness, reduced dexterity, and mobility (Dr. Gu)

    o Referred to EMG for carpel tunnel syndrome -prognosis negative, Dr suspected pinched nerve.

    o Referred to MRI for neck, and Physical Therapy

    – No pinched nerve on MRI

    – Physical Therapy had no affects, grip in hand weaker after 1 month

    · April 28, 2022. After visit with new PCM (DNP Che) because left finger getting weaker, suggested MRIs.

    o MRI of brain for Parkinson’s Disease -negative.

    o MRI Brachial Plexus W/ & W/O Contras -negative

    o Referral to Neurologist

    · June 21, 2022. Visit with Dr Chacko

    o Blood work ordered

    o EMG ordered

    – Asialo GM1 High

    · August 22, 2022. Visit with Dr Chacko for EMG

    o Motor Nerve Conduction Studies completed

    o Blood work ordered

    o B12 High, Asialo GM1 High

    Late Sep 2022 left leg weakness and right finger tingling, numbness & weakness

    Mid Oct 2022 Slurred speeches on and off. Burning tingling sensation on my tongue

    Late NOV 2022 Seen by Dr. Weiss, UW-Medical Neurology

    What I find even more interesting is this is quite the same as what has appeared to a patient here, see link below to article at the National Library of Medicine:

    New-Onset Amyotrophic Lateral Sclerosis in a Patient who Received the J&J/Janssen COVID-19 Vaccine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10035647/


    <font color=”rgba(0, 0, 0, 0)” face=”inherit”>AS a family, we both previously decided to do genetic testing via 23andMe before COVID, </font><font face=”inherit” style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>since she’s been diagnosed, she’s had </font>even more tests<font face=”inherit” style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”> from Invitae, Prevention Genetics, and even Ancestry.com</font><font color=”rgba(0, 0, 0, 0)” face=”inherit”>. I’m also </font>trying<font color=”rgba(0, 0, 0, 0)” face=”inherit”> to find a way to compare her genes </font>(those that are known to cause ALS)<font color=”rgba(0, 0, 0, 0)” face=”inherit”> pre-COVID </font>vaccine<font color=”rgba(0, 0, 0, 0)” face=”inherit”> with post-COVID vaccine genes in hopes to fins a small sliver of hope, so maybe we can find a way to cure her. </font><font face=”inherit” style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color); background-color: var(–bb-content-background-color);”> </font>


    These are our thoughts.

    Thank you.

    • DaveAndKimberly

      Member
      February 18, 2024 at 3:22 pm

      Hello,

      My previous post must have had issues, so I’m breaking this down in parts:

      Very new to the site, but We (my wife of 34 years, and I) strongly believe that her ALS came from the Pfizer COVID vaccine. Her symptoms became noticeable 2 weeks after her second shot. Here’s how her symptoms presented:

      End March of 2021

      –Started to feel tingling and numbness in left hand.

      July 2021.

      –Went to see PCM at McChord Air Force Base but was sent to ER because of high blood pressure related to lab coat fear (Dave is a retired military officer, and we used the medical facility at the base).

      –Original issue was tingling and numbness in left hand.

      August 13, 2021, Husband hit left side of head with top of 4-Runner when closing (Neurologists would later say this had no relation to ALS).

      –Lips were shrinking and numb.

      –Jaw could not close.

      January 2022 established new PCM (Not related to military instillation), because left finger weakness.

      –Difficulty holding clipper and clipping right fingernails

      –Numbness, reduced dexterity, and mobility (Dr. Gu)

      –Referred to EMG for carpel tunnel syndrome -prognosis negative, Dr suspected pinched nerve.

      –Referred to MRI for neck, and Physical Therapy

      – No pinched nerve on MRI

      – Physical Therapy had no affects, grip in hand weaker after 1 month

      April 28, 2022. After visiting again with new PCM (DNP Che) because left finger getting weaker, suggested MRIs.

      –MRI of brain for Parkinson’s Disease -negative.

      –MRI Brachial Plexus W/ & W/O Contras -negative

      –Referral to In-Network Neurologist

      June 21, 2022. Visit with Dr Chacko

      –Blood work ordered

      –EMG ordered

      August 22, 2022. Visit with Dr Chacko for EMG

      –Motor Nerve Conduction Studies completed

      –Blood work ordered

      –B12 High, Asialo GM1 High

      Late Sep 2022 left leg weakness and right finger tingling, numbness & weakness.

      Mid Oct 2022 Slurred speeches on and off. Burning tingling sensation on my tongue

      Late NOV 2022 Seen by Dr. Weiss, UW-Medical Neurology

      –EMG Ordered

      –Invitae Genetic Testing

      Mid-February 2023 Seen by Dr. Rothstein, John Hopkins University, for second opinion.

      –EMG Ordered

      –Invitae Genetic Testing

      –Prevention Genetics Genetic Testing

      You will all notice above, that as with everyone else, it seems that PCMs never fully understand the symptoms of ALS and will always try to troubleshoot and diagnose the wrong illnesses, which in terms of becoming a waste of resources and valuable time.

      What I find even more interesting is this is quite the same as what has appeared to a patient here, see link below to article at the National Library of Medicine:

      New-Onset Amyotrophic Lateral Sclerosis in a Patient who Received the J&J/Janssen COVID-19 Vaccine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10035647/

      And this article as well:

      COVID‐19–accelerated disease progression in two patients with amyotrophic lateral sclerosis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8441768/#:~:text=The%20second%20patient%2C%20who%20had,more%20rapid%20progression%20of%20ALS

      Part 2 of the story: I’ve been trying to find a way to compare 2 different Genetic Tests.

      Precursor to COVID-19: My wife and I decided to explore our ancestral lineage, so we both decided to take a genealogy test with 23andMe.

      Post COVID, the Governor of Washington State decreed that all state employees would need to have proof of COVID Vaccine to remain employed, as well as mandated that businesses need to see proof of vaccine from customers to allow each customer entry into an establishment. So, of course, as an employee of the state, and with our strong desire to escape home-lock-up, WE decided to get the COVID Pfizer Vaccine.

      My hope is that if I can compare the 23andMe genetic test results with the ALS diagnosis genetic tests, maybe I can find a supplemental or other method to help ease the pain caused by this unholy disease.

      Thank you for your time.

      • powerpadman

        Member
        March 17, 2024 at 3:47 pm

        Hello Dave, I saw your comment here and wanted to add my own experience. I’m so sorry for your wife’s diagnosis!

        My brother, just 37-years-old, was recently diagnosed with familial ALS. We have one aunt that passed from ALS 15 years ago, but that was thought to be sporadic and ALS wasn’t even on our radar.

        As many with this horrible disease try to do, we are racking our brains to potentially understand what triggered his ALS. We also understand that the triggering may have been multi-factorial.

        Also of note, his initial DNA panel from Invitae came back negative. I think 34 genes were tested.

        Here’s a timeline of his Covid vaccine, booster, and subsequent symptoms:

        • Pfizer vaccine in early 2021 with booster in late 2021

        • Covid at end of 2021

        • Beginning of 2022, had rash over whole body, hands puffed up like a balloon, and behind ear was a swollen node ball

        • Throughout 2022, experienced continual fatigue and body aches, began taking magnesium supplement to potentially address these symptoms

        • In mid 2023 had foot drop, cramps, achy foot and calf

        • Later in mid 2023, got so sick that movement was even difficult

        • Later in mid 2023, had rash again on head, hands, and arms

        • Late 2023, foot drop got worse, lots of twitching and tremors, major weakness in left leg, and Hyperreflexia/Babinski

        • End of 2023, EMG shows upper/lower abnormalities suggestive of motor neuron disease – diagnosis of familial ALS

        In reading several Reddit posts here as well as the other ALS online forums, some point to no evidence the vaccine or Covid could trigger ALS. Another argument is that we haven’t seen an influx of ALS diagnoses since the vaccine and Covid.

        However, isn’t it possible the vaccine and/or Covid could have triggered, or played a part in triggering ALS in some people who carried a rare ALS gene? As my brother’s gene didn’t appear on the Invitae panel, he doesn’t carry a more common gene, so the assumption is that he has a rarer or even undiscovered ALS mutated gene.

        Wondering if others have also experienced a similar story?

Log in to reply.